Friday, April 25, 2014

It's in you to give...

Look what I was privileged to be able to do this week in honour of another sweet heart baby named Peyton...


Yeah, that's me...the girl who used to be terrified of needles and who would faint at the sight of blood...Apparently I'm not like that anymore - all thanks to my brave heart warrior who has shown me what true strength is.  Funnily enough, the nurse who was with me was convinced I was about to faint and when I asked why she said "well, you never had much colour to begin with!" Oh dear...I may need to hit the tanning beds before going down south next month.   I apologize for the very uncool socks in my Toms, but it was a cold "spring" day and I didn't want to freeze :)  I got to meet Peyton's parents the day before the donor clinic, and they are two very strong and special individuals who have faced incredible challenges for their heart baby, in particular because they are remotely located in Labrador.  I'm determined now that I will be a regular blood donor, every 56 days or so, because it's such a small thing to do that makes a huge impact.  One blood donation can save up to 3 lives...at least 5 blood donations are needed for one open heart surgery...as much as 50 donors can be needed for a car accident...and the shelves of Canadian Blood Services here in St. John's are almost bare....they truly are in desperate need of blood donors.  It was said to me that day that if everyone who was eligible to donate blood made one donation a year, there would never be a shortage.  I'm so excited to say that myself and another Heart Mom have been invited to speak at an event to celebrate the regular blood donors who are receiving certificates in May - I am really looking forward to the opportunity to say thank you to people who have made a difference in this way.  My son would not be alive today if there were not regular blood donors - that is a fact.  Also, our local Heart parent support group -  NL Heart Support Group on Facebook - are now registered to be Partner for Life with Canadian Blood Services. It's so exciting! There was also talk of a possible blood donor day in honour of my own Heart Warrior - I will keep you posted if that amounts to anything!

The Anstey household has been going through a period of adjustment for the past week - we are now a one income family as I have been granted a leave of absence for another year from my work to care for Jake, and Georgia is no longer in daycare.  Since Jon works from home it's quite a full house these days with all of us and our 100 lb dog.  Today was the first day that Georgia needed to come to the Janeway with us for one of Jake's routine appointments.  This was a short one, about 20 minutes long, and by the end of it Georgia was tugging on  my sleeve and saying that this was "so boring".  Oh my.  Here are my munchkins in the waiting room at the Dietician's office:


Even during trying times when I am praying for patience, I am blessed.  So blessed.

Jake has not been gaining weight well, despite my best attempts to give him fatty food.  His milk is still extra fortified, with more calories than normal infant formula, and we have switched from using whole milk in his food mixtures to using 18% m.f. coffee creamer...and still, only 2 ounces were gained in the last two weeks.  At least it's better than the two weeks before this, where there was no weight gain at all.  Come on little boy, we need to fatten you up!

I'd like to ask those of you who are able to fit another baby onto your prayer lists to visit the page https://www.facebook.com/pages/The-Strong-Owen-Fund/501607656617461?ref=stream and click LIKE to be given updates on the progress of another little boy with half a heart.  His name is Owen, and his parents are both Christians who are relying fully on God to help them through this battle - it's still early days as Owen is about 23 weeks gestation at the moment, but there is possibility of surgery in utero before Owen can be born.  Please keep this family in your prayers and thoughts.

Remember baby Sara? I'm so happy to share that she is finally in her home with her parents and from the picture I saw of her on Easter Sunday she is more beautiful and happy than ever.  What a trooper.  Way to go baby Sara (and Mom and Dad!)

I love having happy news to share.

Here are a couple of pictures from Easter sunday - this was Jake's first Easter, even though he was over a year old.  It's funny how that works...last year Jake was born 3 days after Easter Monday...and this year he had his birthday two weeks before Easter Monday...so strange.





Have a great weekend everyone.  Life is beautiful, take advantage of every day - even the rainy ones!

Wednesday, April 9, 2014

Happy 1st Heartiversary Jake!

The Lord heals the broken in heart, and binds up their wounds
- Psalm 147:3



Today is the first anniversary of the day the healing interventions began on Jake's heart.  One year ago today Jon and I got up in the middle of the night and walked from Ronald Mcdonald House to SickKids to hold our baby for a few hours before handing him over to the surgeon to be operated on.  Thinking back on those sweet hours I remember that we always kept coming back to his perfect chest, with no scars or wounds, knowing that it would soon be wide open.  Here are two of the very few of the pictures we have of of Jake's perfect chest:



Today that same chest looks very different, but it marks Jake as a survivor.  One of the quotes I love now says: "From every wound there is a scar, and every scar tells a story; a story that says, I survived!" Those of us who are Heart Moms are doing our best to have our children feel proud and confident of their "zipper", and I dream that one day teenage Jake will be baring his chest with pride when he goes swimming with his friends.

The 8 hours we spent in the waiting room on that day were incredibly long.  Being only 5 days after a c-section I was quite sore and swollen and as if the post pregnancy hormones were not enough, here I was handing my son over to stranger knowing that there was a 20% chance that he would not come back to me alive.  I spent most of the waiting time holding on to one of Jake's little hats, a white bunny hat, stroking it and draping it over myself as if having it on me could make me feel like part of Jake was on me too.  Only those who stayed with us at Ronald Mcdonald House during our two months there will know that I also slept every night with this same hat draped next to my head on my pillow and one of Jake's recieving blankets that smelled like him covering my chest.  Without these two items I was unable to relax enough to get any sleep.  Jon and I had Mom, Dad and Georgia for company during that long wait, and for that I am so grateful.

Then...after eternity of waiting...the surgeon walked into the waiting room looking for us...

One thing we have learned about Jake's amazing surgeon is that his facial expressions give no hint of whether the news is good or bad...and after telling us that Jake was doing fine, he mentioned that the surgery had been further complicated by the shape of Jake's archway, which made reconstruction difficult and tedious.  This same "difficult" archway would lead to Jake being taken into emergency surgery the following day, but at that moment we had no knowledge of that possibility.

Jake's recovery was long, and full of ups and downs, which I know I blogged about several times over our stay in Toronto.  I am overwhelmed and humbled by how great my God is - and know that it was his hand that guided the surgeon and other team members through his two month stay in recovery from the Norwood, emergency open heart, and pacemaker implantation.  I have learned the hard way, how to praise God in the storm.  The first verse and chorus of that song are perfectly written - it was as if it had been penned just for me in those moments...

I was sure by now
God You would have reached down
And wiped our tears away
Stepped in and saved the day
But once again, I say "Amen", and it's still raining

As the thunder rolls
I barely hear Your whisper through the rain
"I'm with you"
And as Your mercy falls
I raise my hands and praise the God who gives
And takes away

[Chorus:]
And I'll praise You in this storm
And I will lift my hands
For You are who You are
No matter where I am
And every tear I've cried
You hold in Your hand
You never left my side
And though my heart is torn
I will praise You in this storm

Tonight we are celebrating Jake's first heartiversary, as it is known in the CHD community.   We even have a specially made half heart cake for our superbaby.  It was made by Cakes by Christa, and I highly recommend her if you need a cake for a special event! If you know a little about Jake's anatomy, you'll appreciate that this cake shows the left side of a heart which is Jake's normal sized ventricle.  Jake's right ventricle is hypoplastic, and very small, which is where the half a heart analogy comes from.




Happy Heartiversary sweet boy!

Friday, April 4, 2014

Happy 1st Birthday Superbaby Jake!

April 4 is Jacob's birthday.  As of 1:43pm today, my superhero is a one year old.  I've been so emotional this week, and today especially.  It's a huge milestone for us.  I remember not that long ago sitting in SickKids hospital praying for Jacob to live, to have a chance to be happy and to reach his first birthday.  My prayers were more than answered.  Jake is the happiest, sweetest little boy I know.  When life hands him lemons, they usually take the form of hospital visits, pokes and prods and needles; but this boy makes the sweetest lemonade.  Happy birthday, my darling.  We love you so much.



This past week Jake was hospitalized for 2 days because of a virus.  The swab results came back today to show that it was not RSV, thankfully.  I wound up taking Jake to the emergency room twice on Monday, first in the morning and then again at night.  At the night visit we were admitted because of low oxygen saturations.  Jake was needing help fighting off this virus.  Jon and I spent two days/nights with Jake there, thanks to my sister, Mom and Dad for watching Georgia and to a great neighbour for helping take care of our dog.  Of course, this all had to take place during one of the largest storms we have had this winter.  Never a dull moment in our lives!  He's doing better today, still coughing and lots of runny nose fluids, but our happy baby made a reappearance on Wednesday when he was discharged from the Janeway.

I took this video of Jake when he came off the oxygen at the hospital, and was starting to act like himself again.  Prepare to be charmed by Mr. Peekaboo!

https://www.facebook.com/photo.php?v=10153979763470611&l=6547405411324676975


Jake`s first birthday gift today was an echo with our favourite cardiologist, Dr. T.  Looking back over the events since Jake`s diagnosis, this doctor is one of the people I am most thankful for.  I truly believe that she was meant to be Jake`s cardiologist, and that the bond that has developed between her and my family is a gift.  The latest update on Jake`s heart is that his Left Pulmonary Artery appears to be growing with him, although it still remains about 50% smaller than his Right Pulmonary Artery.  To be more specific, his RPA is 8 mm, and his Left is 4.5 mm.  It`s a drastic difference, but so far there has been very little change except for the growth that it has made in the last six months.  We are still keeping a very close eye on that, but there is good reason to believe that it may hold it`s own until Jake is due for his next open heart surgery, the Fontan procedure, when an attempt to correct the issue can be made.  Until then, we`ll eat cake and be happy...





I`m so thankful for my children.  Georgia has become the best big Sister that Jake could have.  We were at a playgroup a couple of weeks ago, and Georgia and Jake were sitting on a  playmat when another child came over and reached out to touch Jake`s feeding tube.  Georgia leaned over and told this little girl  "You can`t touch him...you have germs"! Honestly, I kid you not.  I am so impressed with her.




Claire's 3rd Annual Craft Fair was a big success, the numbers from the event were that not including children under 12, 450 people came through the doors that day.  Our local NL Heart Support Group was there with an awareness table, to help spread knowledge of Congenital Heart Defects.  Here are a few pictures from that event.  I am so proud to have been a part of it, and hope to make it a regular part of our life to spread CHD awareness.  Baby Jake was representing there, too!






Tonight we are celebrating Jake's birthday with family, and next weekend we are having a Superman party with all his friends.  We have so many reasons to celebrate and be thankful, so that is what we will do!